Last weekend my two best gal pals came to visit from Denver and NYC. I felt bad keeping them cooped up in the hospital room with me especially since they both came from snow. Luckily, I got released a few hours before their flights! We had enough time to grab lunch, snap a few pics and enjoy beautiful Santa Barbara. I always miss them, but I find myself missing them more these days. So happy they came to visit!
Surprisingly enough I'm learning to love writing. With that said, I feel my posts have been more reflective and creative and haven't been appropriately keeping everyone up to date on the medical side of things. I know these posts aren't as fun to read, but many of you have been asking for the latest treatment four-one-one. Here are some treatment details and round-about important dates ... My second round of chemo was a breeze. I was only admitted for five days and was released back into the world on the sixth day. They drew my labs three times as everyone was in shock at how "healthy" and well I was responding. I have been out living the, "Cancer-Land Dream" for exactly one week now. Part of being an outpatient is going to The Cancer Center to get labs drawn every other day. It took about a week for my blood counts to drop, but once they did, they really dropped. Today I got my labs drawn and was sent straight to the emergency room to be immediately admitted back into six-central (my wing of the hospital) for transfusions. I have felt super lousy the past few days in terms of being incredibly sleepy and getting weird bruising in my sleep, as well as a weird rash on my feet, ankles and head. I really should have paid more attention to these signs instead of brushing them off, but that's just the kind of tough girl mentality I have. And I believe that is the same mentality that's going to save my life. Now don't get too excited! Transfusions aren't anything too serious, people. The word "transfusion" really seems to freak people out. So, let it be known that blood transfusions are the easiest part of having leukemia. Platelets are the second. My last platelet transfusion didn't go so swell. I had a few difficulties with welting, and blood coming to the surface of my skin, but today went great. I'll have more blood drawn at 4am to check my hemoglobin. At that time a decision regarding a blood transfusion will be made based on those lab results. I'm fairly confident that I won't need one and will be headed back home tomorrow. I'm a strong believer in positive manifestations. Ideally I was hoping to be re-admitted to cottage hospital the day after Thanksgiving, November 29, 2013. After speaking with Dr. Greenwald today (he won doctor of the year) he agreed we could wait until then. I couldn't be more excited. Thanksgiving is my favorite holiday!!!!! Gobble Gobble!
This next round of chemo is a big one! The biggest, most important, most intense, and most potent thus far. As I've mentioned in previous posts, I'll be receiving a pediatric regiment to hopefully knock this thing out of me. It's expected to be rough and I'm expected to be in the hospital for 3-4 weeks. I'll keep everyone posted on that. As always, I'm STILL completely blown away by how many people are reaching out. It feels so good to have so many beautiful souls rooting for me. I can't wait to pay it forward.
One phrase everyone is familiar with is, "choose your battles wisely." It’s fair to say that in my life I have knowingly chosen many of my battles, and not so wisely. Now, in the bigger scheme of things it’s painfully apparent how trivial, childish, brainless, at times outrageous and miniscule many of those battles were. However, at hand is the largest battle of them all. A battle I did not choose.
I don’t know who or what chooses these battles and it’s hard to see or understand the rhyme or reason. All I know is this is one war I have to win! I like to believe that everyone has a soul mission. A life battle if you will. Though no one truly knows what their mission is, what we do know is, the mission/battle is accomplished in a lifetime and the lesson is usually shared by others. Hence why groups of souls travel together and why I believe soul mates exist- in many forms. Now, I’m not trying to get too religious, or spiritual on anyone here. I just wanted to note all of the beautiful souls I have in my corner...
This past weekend was one for the ages! Although I was in the hospital the outpour of support was mind-blowing. One of my dearest friends, Case-dawg had her 26th birthday that several people came to town for. Casey may be known to many, if not all as, “dawg”, but she is also in fact a bird. Case-Bird has been working her tail feather off to put on a benefit for me. “Kisses for Kaleigh” was held last Sunday night, November 10, 2013 at Indochine in downtown Santa Barbara. What a hit it was! Her party for me was a huge success in which 10k was raised to help with my medical expenses. Being that I have been in and out of the hospital I was unaware for quite some time of what Casey had up her sleeve. However, I am so grateful. I know she will read this so a BIG thank YOU, Kathleen Ann Pinero, Casey, Case-dawg. You are SO beyond amazing. You are one of the things that make this battle worth fighting and life worth living and I love you. Also, I couldn't be more grateful for EVERYONES unbelievable support. I feel truly blessed.
A few non-justifying photos from the weekend...
A HUGE thank you to these beautiful babes and all their hard work :)
My soul sister and sister-seester. Love <3 Love!
Happy Belated, Case-Dawg. You deserve the world!
Love, Love, soooo much love,
For more photo updates you can follow me on instagram : k_face
I’ve spent days trying to pick an angle in which I should write about loosing my hair. There are so many. I’ve always liked to add some comedy to my less than comical situation and humor was a seemingly easy writing route. Although funny doesn’t even begin to explain the feelings I embody when reflecting upon being bald, not to mention going bald. Here it is on the real real...
My hair has always been one of my favorite things about myself. Most of my life it has been beautiful, brown, bountiful and long. Though, I have dyed it nearly every color in the book. Even when I wore it spiked and short I acquired the name “cool hair” from a few guys around campus. Not to mention my natty dread that I've been harvesting for nearly SEVEN years now (don't worry, I saved it). Whether I used it as a way to express myself, or hide myself, I’ve always valued my hair.
A part of me actually believed I would be the one in a milli who wouldn’t loose their hair. The day I got discharged from my first round of chemo was a day full of emotion. I was re-released into this big world that had been going on, continuing and changing. The hustle and bustle never stopped and people were rushing around everywhere. All the while my world was at a stand-still. All the while my world felt as if it was digressing. I got out of those glass hospital doors and into the car, windows down, smiling. I was free! All that freedom had my hair falling out in clumps. No more than a day later my dear friend Kaleigh Nickerson came over and gave me a fresh short cut. The short hair was painful for me to get used to, but less painful emotionally to loose.
Over the next couple days I continued to shed like a dog, only much worse. My roommate Megan said to me, “Kales lets shave your head. You don’t need all that raining down on your parade everyday.” She was right! The next morning I expressed to my boyfriend, Zach that I wanted to shave my head, but I didn’t have a buzzer. He opened the bathroom drawer and pulled out his face, pube, head electric razor thing and says, “lets see if this works.” Without any further notice he runs it across the front of my hair. Welp, its settled than. Now that I had a line shaved across the front of my head I was left with no choice. He continued to shave it all off.
I was staring Zach in the eyes, my heart had jumped into my butt and my back was to the mirror. I couldn’t bring myself to turn around. He had a familiar look in his eyes. Similar to the one he had when he pulled off my snowboard glove to find my wrist completely mangled. I couldn’t look then either... Finally, I turned around and much to my surprise I didn’t cry! I felt strong and weak at the same time. It’s one thing to be hurting, or sick on the inside and be able to hide it with your appearance. When you loose your appearance you loose a lot more than you imagine. I felt naked and ashamed. I quickly reached for a beanie. I don’t think people realize how strong the judgments and restrains of society are. It’s fucked up, man! Everyone looks at you different. They know you have something wrong with you. It’s almost as if people become scared of you.
Fighting a terminal illness brings feelings of being different from everyone else. I’m sure other cancer survivors share this loss. Instead of a loss, I’m turning my journey and lack of hair into a gain. I never dreamed I could fight, love, or be loved with such passion and dedication. This next year isn’t going to be an easy one, but it will be MY year! I WILL have beat cancer! I WILL have developed a loving and trusting relationship with myself that I never could have dreamed of. I WILL have broken through many of the restraints that society puts on us. I will be confidant in knowing I am a beautiful warrior! As are YOU! You are a warrior. You are beautiful. Everyone is fighting some battle and each is relevant to their lives. Be kind to everyone you meet.
A little reading relief... A bunch of pictures debuting my baldness. I asked my beautiful and talented sister to take a few pictures of me as I’m growing into the skin i’ve always had and never embraced.
P.S. I'm super grateful for my eyebrows and eyelashes. I hope they choose to stick around a while.
-K For more photo updates you can follow me on instagram @k_face
I've had a hard time writing recently, though a notable amount of things have been going on. First off, I'm home! I was discharged October 26th, with an inpatient check in date of Monday, November 4th. Yesterday I was suppose to start my second round of chemotherapy. Unfortunately, my insurance has decided they want to be anything but collaborative. So, until that gets squared away, I am home... and not complaining. Since it is important for me to begin my second round of treatment, I met with an amazing team of specialists at Cedars Sinai Cancer Center in LA. One major topic of discussion was a bone marrow transplant. Those of you closest to me understand my personal concerns with going that route. I was assured by the team that although the transplant is "THE cure", it is only ONE of my options at this time. I'm happy to announce that I have decided to keep the bone marrow transplant as an "ace in my sleeve". The mortality rate for me at this point is around 10% with chemo treatment weighing as a better option than transplant with all side effects, and personal risks considered.
Also aiding in this decision, Cedar's suggestion to change my current chemotherapy treatment plan to a more rigorous and aggressive pediatric treatment. Pediatric sounded super odd to me at first considering I'm twenty-six. They explained that contrary to my belief that it would be a low dosage, it in fact would be more aggressive because children can apparently handle it better. They believe this new regiment will put me into remission just after this next round. Now, I understand how important this "ace in the sleeve" is. So, Kristin (my sister) is still being tested as a bone marrow match and we can cross that bridge if I do not respond well to this new treatment plan.
I am incredibly anxious to begin the second round of chemotherapy. I have full confidence in this team of doctors, and I am looking forward to putting this all in the past!
I love you guys all so much and want to thank you again for the support and positive vibes.
The best part about going to LA is the drive home. How could you not love Santa Barbara?!